Hi People
I'm a FMS-CFS/ME person in Melbourne. Been on the mailing list for ages, but never contributed. I have a memory of University of Newcastle doing a lot of what was controversial research which established CFS/ME as an actual valid disorder. I will try and find it, but I think it had a title with Hunter Valley in it somewhere. I'm retired now, so have more time to do stuff.
Mike

Yeah, the Newcastle Uni have done quite a bit of work over the years. I think some of the people involved years back are still there? Anyway, just thought I'd say hello from down the road.Ahh, just found this from 2008...they got some ongoing research money...

Tony.. My brain hasnt been up to working on the wiki for a long while but I just added the info you gave about that research grant in. thanks for the info.
Hereward, Hi, we are interesting to hear of any you know which is missing here

"Recent research from the University of South Australia: ... in light of carnitines critical role in mitochondrial energy production, it has been suggested that chronic fatigue syndrome may be associated with altered carnitine homeostasis. This study was conducted to comparatively examine full endogenous carnitine profiles in chronic fatigue syndrome patients and healthy controls."

I just found one which is in a journal and can see our Aussie researchers are in it (Donald Lewis ... David Stapleton, Henry Butt and Paul Gooley are at Melbourne University), but the journal I see it published in dont mention Aust. (just the researchers and Belgium where Meirleir is). http://iv.iiarjournals.org/content/23/4/621.abstract

Abstract
Patients with chronic fatigue syndrome (CFS) are affected by symptoms of cognitive dysfunction and neurological impairment, the cause of which has yet to be elucidated. However, these symptoms are strikingly similar to those of patients presented with D-lactic acidosis. A significant increase of Gram positive facultative anaerobic faecal microorganisms in 108 CFS patients as compared to 177 control subjects (p<0.01) is presented in this report. The viable count of D-lactic acid producing Enterococcus and Streptococcus spp. in the faecal samples from the CFS group (3.5 x 10(7) cfu/L and 9.8 x 10(7) cfu/L respectively) were significantly higher than those for the control group (5.0 x 10(6) cfu/L and 8.9 x 10(4) cfu/L respectively). Analysis of exometabolic profiles of Enterococcus faecalis and Streptococcus sanguinis, representatives of Enterococcus and Streptococcus spp. respectively, by NMR and HPLC showed that these organisms produced significantly more lactic acid (p<0.01) from (13)C-labeled glucose, than the Gram negative Escherichia coli. Further, both E. faecalis and S. sanguinis secrete more D-lactic acid than E. coli. This study suggests a probable link between intestinal colonization of Gram positive facultative anaerobic D-lactic acid bacteria and symptom expressions in a subgroup of patients with CFS. Given the fact that this might explain not only neurocognitive dysfunction in CFS patients but also mitochondrial dysfunction, these findings may have important clinical implications"

I just found that on other CFS/ME site but with no link.. so i dont know where they got it from. "Bio21 Institute of Biotechnology and Molecular Science, Department of Biochemistry and Molecular Biology" is that part of University of Melbourne? as the funding for what seems to be same study went to University of Melbourne.

"Recent research from the University of South Australia: ... in light of carnitines critical role in mitochondrial energy production, it has been suggested that chronic fatigue syndrome may be associated with altered carnitine homeostasis. This study was conducted to comparatively examine full endogenous carnitine profiles in chronic fatigue syndrome patients and healthy controls."

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Wow.. I was one of the 44 CFS/ME people who participated in that study but I'd never knew that it had been published and never knew what my results meant (I got a copy of all my levels of the different Carnitines (51 different tests) but it didnt say on that what was the normal ranges.

Now I know the results for the study and what my blood probably showed. So a huge thank you.

It is proposed that this disturbance in carnitine homeostasis is a result of a reduction in carnitine palmitoyltransferase-I (CPT-I) activity, possibly due to the accumulation of omega-6 fatty acids previously observed in this patient population. It is hypothesised that the administration of omega-3 fatty acids in combination with L-carnitine would increase CPT-I activity and improve chronic fatigue syndrome symptomology

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got to check out the MRI study link you put up next ..as Ive been in autonomic studies too which involved MRIs and Ive never seen those published either.

throwing gear here to find better links for later
"Rey Casse (Adelaide SA) used SPECTscans to study regional cerebral blood flow in CFS. He recommended that a triple headed camera be used for accuracy and reliability. 13 CFS patients' scans were compared with 11 people suffering from other conditions with normal scans. Visually, deficit in regional cerebral blood flow was found in the temporal areas in 7 patients, and equivocal in 3. Statistical Parametric Mapping was applied to show location and amplitude of significant focal deficits. Most deficits were found in the brainstem, temporal lobes, frontal lobe and anterior cingulate gyrus.
Research findings presented by Rey Casse (Adelaide, SA) to The Sydney ME / CFS Clinical and Scientific Conference, December 2001
"

Brain Link to Chronic Fatigue Syndrome
ImmuneSupport.com
07-15-2002
An area of the brain that controls the stomach receives substantially less blood in some people with chronic fatigue syndrome, a study shows. The finding adds more weight to the argument that the controversial illness is biological, not psychological.
Brain scans of 40 chronic fatigue patients were carried out by Adelaide scientists and compared against the scans of healthy people. The director of nuclear medicine at Queen Elizabeth Hospital, Dr Steven Unger, who headed the study along with neurologist Dr Rey Casse, said: "There was a very strong change in cerebral blood flow in patients."
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wow tania, now we need to put it together some how and then flood the right people with this info. I might try and come up with my only little thing using some of your info and run it past u guys and maybe others can do the same, maybe different version can be more effective then just a blanket version of the same info being sent out might be more effective. I thinkit might take me awhile though.

Alex i think has experience at doing this advocacy work, we need to bleed some of his experience.

wow tania, now we need to put it together some how and then flood the right people with this info. I might try and come up with my only little thing using some of your info and run it past u guys and maybe others can do the same, maybe different version can be more effective then just a blanket version of the same info being sent out might be more effective. I thinkit might take me awhile though.

Alex i think has experience at doing this advocacy work, we need to bleed some of his experience.

cheers!!!

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Melonie really helped some too getting this wiki page together along with others too wee bit. I'd love to see some of this info used to be sent to people who need to know it to help us all.
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Info on Australia outbreaks Im finding hard to find and get details on. If he's still around and contactable.. Im thinking one called C.S. Goodwin at the time from Royal Perth Hospital (dept of Microbiology) who published article in Lancet 30 years ago (in 1981) writing on "Was it benign myalgic encephalomyelitis?", researching various outbreaks worldwide, would probably know about the early Aussie outbreaks http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(81)90134-3/fulltext# if he's still alive and contactable to ask.
Im realising a lot of the old ME experts or people with big interests in that would of passed or be close to passing away by now taking knowledge and details of ME history with them. **sad**
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(on a little further research.. this guy may be still around as he was still getting his articles published online in 2008 on helicobactor pylori thou the article is from 1994 (seems to have dropped his interest in ME?? or did he?, he came well known in that other field..He ended up working with another at Royal Perth Hospital, the rediscoverer of Helicobactor pylori and discoverer that it causes stomach ulcers)..

Crap looking back at history one wishes some of these outstanding scienctists stayed studying their interest in ME or managed to get the other famous scienctists involved)..

they havent taken away his correspondence details "Correspondence: Professor C. S. Goodwin, Department of Medical Microbiology, Faculty of Medicine, United Arab Emirates, PO Box 17666, Al Ain, United Arab Emirates." Where on earth is that?? He moved overseas??
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